Wednesday, March 21, 2012

Happy World Down Syndrome Day

Today is the day we join hands all around the world to celebrate our loved ones who were specially blessed with an extra chromosome.  While trying to decide what to post today, I went back over the powerpoint that my oldest John did for his 4-H club about World Down Syndrome day 2 years ago, and found that everything about it still applies.  It is very similar to the one he did for the fair that year, and got Grand Champion at our county fair and a purple ribbon at our state fair.  This is the presentation he started with:

 If you would like to read more on World Down Syndrome Day, click here to go to the World Down Syndrome Day link up. 

Tuesday, March 20, 2012

Happy Birthday Ben!

Four years ago this morning I was awakened by a feeling of pressure being released.  I knew before my feet hit the floor that my water had broken.  But how could that be?  I had 3 weeks to go before my scheduled c-section.  Both John and Noah had been scheduled c-sections due to John being breech, so I was totally unprepared.  I had not even discussed with my Dr. what to do, since I had never even so much as felt a real contraction with the other two.

I called the on call Dr. who said to get to the hospital to get checked ( I felt bad for waking him up, especially when I saw him at the hospital later, to assist in my surgery).   I took a shower, threw some things in a bag, we woke up the boys and we started driving to Lincoln.  It was about 6:00 am then.  I waited until we were just about to the hospital to call my Mother-in-law to come get the boys (she likes to sleep in).  I waddled in to the hospital lobby, sat in the first wheel chair I saw, and the boys escorted me upstairs to the maternity ward, while Randy parked.

It did not hit me until right before going into surgery, (when Randy found the first game on TV)  that Ben was going to be born on the first day of  the NCAA tournament.  Looking back now I know why he picked that day to be born.  The boy loves basketball.  Or maybe it is our fault for exposing him to so much basketball at such an early age. We may never know.

The c-section went quick and soon I was brought  my little sweetie for a quick glimpse.  (that was all I had gotten of the other two also)  We knew from the prenatal diagnosis that he would have Down Syndrome so that part was not a shock. I could hear him cry from the warming table while they patched me up, and knew he would be OK.  Next came an hour long echo that I got to watch from the bed just a few feet away.  Ben cried an cried while they check him over to verify that tiny hole in his heart the prenatal scan showed was still there.  This time I was bothered by all his crying.  I just wanted to scoop him up and snuggle him to let him know I was there and he would be OK.

I don't even remember now when I finally got to hold him.  I know John really wanted to be the first one in our family to hold him (other than me) and I am pretty sure he was.

Noah was so proud too.  Black eye and all.

Both boys got to take him and help give him his first bath. 

This sweet little bunny was what they brought me on Easter morning.  
They wanted us to stay one more day, but we were ready to go home.  I had big boys who needed to celebrate Easter with their family.  So we broke out.  

 Ben has been doing great.  He has hit most of his milestones with just a slight delay.  We go to speech twice a month and OT once a month.  Ben graduated from PT at age 2 because he gets plenty just being a boy who lives on a farm, with lots of room to run.  Plus, did I mention that Ben loves basketball!

Today Ben is a happy energetic 4 year old.  His heart is good and he is always on the go.  He likes to copy his big brothers, play with his football guys, shoot hoops, practice reading his sight words, going outside (to shoot hoops), sing "This Little Light of Mine", read the phone book, fold laundry, tear up the house, watch Signing Time videos and eat.  He likes to make friends where ever we go.  We are so blessed to have this little sweetie in our family.  Happy Birthday Bennie Boy!

Sunday, March 18, 2012

Music Contest Time

I am so proud of John for singing in 3 small groups at the recent music contest in Malcolm.   Here is a video of a duet he did with Emily Zakaras. 
Here is a video of John doing a duet with Justin Drake. They also did awesome!

Thursday, March 15, 2012

World Down Syndrome Day is 3.21.2012

World Down Syndrome Day is 3.21.2012.  Please join along with people from around the world to celebrate all individuals with an extra 21st chromosome.

Tuesday, March 13, 2012

Advocacy Conference

This past weekend I had the opportunity to attend the Down Syndrome Alliance of the Midland's Advocacy Conference in Omaha.  While I learned a lot, and enjoyed meeting and catching up with some of the other parents, I have mixed feelings about the conference.

The first speaker was Dr. Brian Skotko, A Board-certified medical geneticist at Children's Hospital, Boston and brother of an individual with Down syndrome.  Dr. Skotko is a dynamic speaker and I highly recommend that if given the chance, every loved one of an individual with Down syndrome should hear him speak.  However, I also heard him speak last year, and his presentation was that same, other than the few thing that had changed over the last year.  I do have to say however, that there were things I had forgotten that I was going to look into, so overall it was good to sit through the presentation again.

Then next presentation was technology.  Sean J Smith of Kansas University was the presenter, and when I walked in the room and recognized him, I began to wonder if then entire conference was going to be a repeat.   This session was awesome.  While again much was the same, I had forgotten many of the tools they had suggested, and made extra notes to myself this time to make sure I looked into many of the things he presented.  The unfortunate part of this session was that there was very limited time and we got started late, so there was no time to really dive into many of the topics.

Even though it was rushed, there was one thing that stands out from this session that was very disturbing to me. A question that was posed to the group that had something to do with what our expectations were for our children to read.  The point of the exercise was to show that we could text an answer and the screen would automatically update with the answers.  The first choice was that they be functional readers, (able to read recipes, signs).  Then next choice was that they would have meaningful inclusion into content instruction.  What shocked me was that over half of the attendees chose that their goal was for their child to be functional readers.   While I agree that all our kids need to be functional readers, is that all we are expecting of them?  I would argue that with 300 sight words, Ben already is a functional reader.  I know he can reads signs and has on many an occasion pointed out to me that we were coming up on the cheese area at Walmart, and that we had better stop and get some.  I have always felt very strongly that our kids will far outreach our expectations, if only we will let them and encourage them.  I don't want to just raise the bar, I want to throw the bar away.  There is no limit, if we give your kids the tools, time and the motivation to learn.  Maybe I am being too optimistic?  Time will tell.

The last session on the conference was on behavior.  It focus more on school Functional Behavior Assessments, which luckily we have not had to deal with yet.  However, I think I might be making some of the information on John and Noah, as their behavior could use some work.

Overall the conference was good, and I was glad I went.  It is obvious that I need to hear information more than once to realize its importance.  

After the Omaha conference I was still bothered by the reading survey, so I went home and watched the video I had purchased from Down's Ed International at a KC conference a couple years ago on Early Childhood Speech and Language.  In this video they said that when children with Down syndrome could understand around 50 words, they were ready to begin sight reading.  I remember coming home from that conference feeling, energized and hopeful, but also a bit behind.  Ben was 2 at the time, and we had not been working on anything that they had suggested yet.  Here is link to the post I did at that time.  However even after seeing all that was possible, deep down, I did not really think Ben would learn to read that quickly.  Sure when he went to school he would learn to read, but never in a million years did I expect him to start reading in just 10 months. Our goal really was just to help him with speech.  Now I wonder why I did not realize that Ben was ready or that I doubted that he could do it.  Oh yeah, I need to hear things more than once.  I forgot.

This summer, after we knew he was sight reading, we got 10 new Signing Time videos thanks to a sale the good folks over at Two Little Hands  were running for their 10th Anniversary.  Just two weeks after Ben had first watched the "Welcome to School" video, I wrote on his doodle board 'pay attention', and the little stinker signed it without hesitation.  I looked at him and said "Wow!  Ben that is amazing!"  He looked back at me and signed "Smart".  Yes Ben.  You are smart.

Tuesday, March 6, 2012

March is a Time to Celebrate!

March is a month to celebrate at our house. One of the most important dates we celebrate is Ben's Birthday. It is hard to believe that Ben is going to be 4 years old on March 20th. We really appreciate all the love and support that our local communities have given to our family.

When we first got Ben’s diagnosis of Down syndrome, we were worried about him being accepted and having friends. Those fears were soon put to rest as we attended community events. He is welcomed with smiles, high fives or waves wherever we go and Ben is usually more than happy to return the gesture. While we have been blessed with such great community support, not everyone is so lucky.

We would like to invite everyone to help us celebrate Ben’s Birthday by standing up for all individuals with intellectual disabilities. Wednesday March 7, 2012 is an important day that has been designated by the Special Olympics organization as Spread the Word to End the Word Day.

Spread the Word to End the Word is an on-going effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word. The campaign, created by youth, is intended to engage schools organizations and communities to rally and pledge their support at and to promote the inclusion and acceptance of people with intellectual and developmental disabilities.

We’re asking every person - young and old - to help eliminate the demeaning use of the R-word–a common taunt used to make fun of others. Often unwittingly, the word is used to denote behavior that is clumsy, hapless, and even hopeless. But whether intentional or not, the word conjures up a painful stereotype of people with intellectual and developmental disabilities. It hurts. Even if you don’t mean it that way.  If you pledge to Spread the Word to End the word in honor of Ben, please leave a comment at the end of this post.

 World Down Syndrome Day
Another important event this month is World Down Syndrome Day.   The date was selected by Down Syndrome International (DSI) to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. 
21 March 2012 marks the 7th anniversary of World Down Syndrome Day and for the first time in 2012 this day will be officially observed by the United Nations.  The voice of those with Down syndrome, and those who love them is getting louder.  Can you hear us? 

 Thank you for your continued support, and for helping us to celebrate during this exciting month of March!